Hi joplin.
I have.not felt well for almost 2 years now. I barely go out, have terrible fatigue. I also suffer From low blood pressure which drops very low on standing and leads to be fainting a couple of minutes later. I have had PD for 12 years and up until the end of my 10. Year coped really well.
The neurologist I see is retiring and is mostly on seminars out of the country. The Parkinson’s Nurse treats me like a 5 year old, is condescending and I ha v given up on them both.
I take madopar. It is now wearing off be between doses and takes over an hour for me to feel them work.
What is really hard to cope with is what I call ’ the dementor visit-- the time between the meds wearing off and starting to work. They bring the anxiety and depression, awful thoughts and to be totally honest I loose all hope.
With the increase in madopar, introduction of Entacapone and slow release simenet, I think I have reached my limit.
A few weeks ago I suddenly started breathing very fast and shallow, was trembling and lost my ability to walk. I would try to speak and all that came out was gobbledygook. I was admitted to hospital where despite being on an elderly care ward (I am 58). The nurses did not know how critical it was to get my meds on time. They could not understand why my stars were good but I was clearly very unwell and thought Odessa panic attack